In December, our Women on Wellness Zoom group hosted Loralei Thornberg, MD, an ob/gyn at the University of Rochester. She is a rock star! She addressed issues in women’s health and specifically in women with disabilities with authority, empathy, and humor. Her talk covered topics from menstruation to menopause, birth control, pregnancy, childbirth, and sexuality. We ran out of time and will invite her back soon. You can download her slides here: Dr. Loralei Thornburg on healthcare for women with disabilities.
Here is a summary of her remarks, thanks to Helen Cave’s excellent note-taking.
General tips
- Disability is not an illness. Unfortunately women in general receive “less than” care when it comes to health care and having needs met. Another reason we need to advocate for ourselves and speak up, be organized with what we need from our healthcare appointments.
- Best time to have an appointment is first thing in the morning, or first appointment in the afternoon. Be sure to explain to the receptionists your specific limitations and your needs when booking the appointment.
- Do they have an exam table that is motorized? It goes down to the floor and then up. It may look like a lazy boy chair with its capabilities.
- Many academic medical centers will have a complex care team, designed for individuals with multiple specialty needs, usually intellectual but can be applied to other disability needs as well.
- Do your best to combine exams and treatments to save on energy and travel time.
- Don’t use family members for mobility aids in the exam room during your gynecology exam. Do make the staff aware (hopefully when appointment is made) of your specific needs, specific to the exam you are in need of.
- It is common for providers to under-screen for many concerns common to women, for example incontinence. If this is a concern for you, please advocate for yourself. Write down your concerns and read them to the provider, at the beginning of the visit.
Known challenges re: estrogen and beyond
- A Dutch test can be done through a naturopath in Canada. It’s a 24 hr urine test for cortisol and estrogen.
- New information is now known about menopause, estrogen and clotting risks. It is stratified information specific to age, menopause age, and co-morbidity history.
- It is not a one size fits all solution for all women. Talk with your provider if you are interested in the possibility of estrogen supplementation.
- There is no current data that estrogen improves overall FSHD disease progression. The lack of studies on women is prevalent in this situation. It is known that women (as a whole) lose muscle mass in menopause.
- It is known that women who are physically challenged or immobilized are at high risk for blood clots when taking estrogen.
- The University of Rochester Registry, doesn’t have questions specific to women and estrogen effects. Dr. Thornburg will take this question/concern to them.
- Use of an IUD for birth control and menstrual period suppression, is recommended by Dr. Thornburg.
- For concerns of the vulva, as related to hormones, there is a department at University of Rochester for you. There maybe one in your area also. Advocate for yourself, ask your PCP or Gyn.
- For rashes and skin irritation from incontinence. Dr. Thornburg recommends Desitin. It is gentle, non-toxic. She shares that we shouldn’t be afraid of the baby care aisle, their products are gentle to skin.
- If recommended by your provider, a hysterectomy should be done laparoscopically to minimize muscle damage.
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